Discrimination follows people with AIDS

Chris W. Green, Yayasan Spiritia, Kupang, chrisg@rad.net.id

"Here's your chance: what message about AIDS discrimination would you like to send to The Jakarta Post readers?"

There are five of us chatting in a hotel room in Kupang late at night; three are "people living with HIV/AIDS" (PLHAs). They're all members of the national network of PLHAs, of which the Spiritia Foundation is the secretariat. We are here to meet with other PLHAs, with service organizations and with people from the government and the legislature.

All three of my friends have suffered discrimination to a greater or lesser extent. Let me tell you the story of one of them.

Sulasi is from East Java (Sulasi is her real name. She is really happy that she has no reason to hide behind a pseudonym anymore). Now 31, and still beautiful, she was diagnosed HIV- positive back in 1990 in Surabaya. She did not know she was being tested for HIV, and gave no consent.

Following the positive test result, she was put under "control" of the local health service, which felt they had a duty to monitor her. When she returned to her home village without giving notice to the authorities, they started a hunt for her, as if she was a criminal.

"At the time, I was told I only had a few months to live," she recalls. "I even contemplated swallowing drugs to kill myself."

Fortunately, this phase quickly passed, and she started to discover the truth about the disease.

After much discussion with her partner (whom she had informed of her diagnosis), she decided to get married. The authorities told she was not allowed to marry, but Sulasi went ahead anyway. Then they told her she should not have children, but again she defied them.

Her first child was born in 1994, a healthy boy. The midwife, however, took it upon herself to travel to Sulasi's village and warn all the neighbors they should avoid Sulasi and be careful not to touch her child. The media also found out and treated the birth as a sensation, regularly reporting the child's progress and including Sulasi's name and residence. As a result, the family had to move to a new village.

"My own family was confused," sighs Sulasi. "All they heard were myths and untruths about AIDS, which made them very scared. But since they learned the truth, most of them have been very good to me."

Sulasi and her husband now have two children, a boy and a girl, and other than Sulasi, none of them are infected. Happily, Sulasi was supported by a very caring doctor, Dr. Kambojie from Malang, who continues to guide her and care for the family, treating them as his own.

Meanwhile, Sulasi remains fit and well without any medication, even 12 years after the diagnosis.

Sulasi first started to speak out about her experience in 1996, when Dr. Kambojie asked her to talk to the congregation at his church. At first she was very scared, but over time gained confidence. Now, she regularly joins Spiritia teams visiting other provinces in the country to give a human face to the epidemic, and is completely open about her infection. Even so, speaking of her own experiences still brings tears to her eyes.

Sulasi's story is by no means unusual, and others still experience the same type of discriminative treatment.

Last year, Spiritia carried out a survey involving trained PLHAs interviewing their peers about violations of their rights. The recently released report indicates that Sulasi's case is very typical. Much of the stigma and discrimination seems to originate with the health service, which commonly refuses to treat PLHAs. HIV testing without consent still often occurs, particularly among marginalized groups such as sex workers and transvestites.

Such attitudes of health care workers inevitably spread to the general population: If families see their infected members being shunned by the medical profession, they will eventually become scared also. The truth, on the contrary, is that other family members, including children, are effectively at no risk of becoming infected through day-to-day activities.

We should take caution, however, not to be too quick to allocate blame.

Discrimination frequently stems from fear, and fear from lack of knowledge. Once correctly informed, most health care workers demonstrate the same care for AIDS patients as they do for others. Our fight must be to spread this knowledge to all levels of the health service.

As Dr. Broto Wasisto, advisor to the Minister of Health, noted at a seminar to publicize the results of the Spiritia survey, discrimination in the health service is outlawed by the Constitution. On the other hand, it is not PLHAs alone who receive such treatment; other marginalized citizens, including the poor, also experience discrimination. The efforts of AIDS activists like Sulasi can help to improve the service to all such groups.

What about the message for readers of the Post? Let's leave it to Sulasi:

"If you meet someone with AIDS, please treat them the same way as anyone else. There's no reason to be afraid of us."

I-BOX:

2002 World AIDS Campaign

"Live and Let Live!" This is the slogan for this year's World AIDS Campaign, with its main theme concerning stigma and discrimination. World AIDS Day is observed every Dec. 1.

Since the outset of the AIDS pandemic, infection with HIV has carried a stigma as the "gay disease", as another disease spread by prostitutes, as the disease brought by foreigners. Let's find a scapegoat and hang a moral label on it.

The virus knows no morals, nor does it discriminate. On the other hand, it does applaud any action which increases vulnerability -- and stigma and discrimination surely fit that bill.

Moral stances can be powerful causes of stigma, and these can be incredibly difficult to change. Meeting an infected person who does not fit the stereotype -- someone we can respect as a human being -- can be a powerful catalyst for change.

Experience has also shown that discrimination often stems from fear, and fear too often is a result of lack of knowledge. If people believe that AIDS can be spread by contact, it is not surprising if they are afraid to shake hands with someone with AIDS. Again, PLHAs can play a crucial role in campaigns to increase understanding.

To some, "Live and Let Live!" may bear somewhat negative connotations: "I don't mind what you do as long as you don't bother me" -- remember "don't ask, don't tell"? For many people now living with HIV and AIDS, even this would probably represent a huge step forward. Perhaps next year's Campaign might offer a more inclusive slogan, however, to encourage us to learn from those brave enough to tell their stories publicly, and share with us their expertise about the disease.